Saturday, 7 July 2012

Well it's been longer than I meant to let it get between posts, but I figure I've been putting it off long enough. A couple of posts ago I talked about how when I disappear from posting its usually a sign I'm slacking off and afraid to face my own music ... but that's really not the case. At least mostly not. The fact is the last three weeks have been a fairly action-packed time. They included mom going away from the girls from the first time for four days and leaving dad in charge. They also included dad successfully having two happy healthy baby girls there to see her when she got back (along with a little help from the vital cogs of Grandma and Grandpa). It also included me coming down with a pretty nasty head cold and lovely run of my favorite Cipro to knock it back down before it settled too badly into my lungs. I've been keeping up with most of my exercise at least trying to do a pretty good clip walking the dog (though I know I should be trying to do more). Appetite has gone a bit off a cliff but that's usually a fairly common side effect for me when I'm on Cipro, hopefully know that that's done the appetite will start to pick back up. I've also learned that I'm a bit of a marshmallow when it comes to heat. After giving up on summer to finally arrive at home we traveled to visit my wife's parents. Now for me, growing up in a Sea side climate, it always takes a bit of getting used to desert climate. Its even more difficult when the temperatures hit the mid 30's and this delicate jam tart is forced to retreat to the basement. I love the sun, I love the ability to take the dog for a dip in the lake. The part I care for less is the feeling I've got a band strapped around my chest. On top of that, the girls are little unused to the warm nights as well which is forcing mommy into some rough night's sleeps. But all in all its been really nice to get on the road here and its great watching the girls enjoy themselves in a big back yard as they continually bring Fiona piles and piles of sticks and balls. Hopefully I won;t be so long between posts here and while I may not give my self an A over this past three weeks for doing everything I need to, I do give myself at least a low to mid B.

Friday, 15 June 2012

Well last week I confessed about not doing enough exercise. I laid out some goals for this week that I wanted to try and reach as far as exercise went and on the whole I did ok. I got myself going for 3 out of the 4 days I'd planned to and even got myself going tonight even though I've managed to pick up my daughters' cold. Next week's plan will be similar with a little more added in. I want to manage at least 4 cardio days and 2 gym work-outs.
Now onto a bit lighter fare. Big moment this week as I finally went out and had much needed shopping spree for some clothes, or at least what passes for a shopping spree as a guy ... a pair of new runners and two pairs of jeans. Yes, yes, I know I really over did it. The reason why this was big news wasn't so much the shopping part (tho that in itself does happen once in every blue moon) but that I felt I'd gained enough weight to go and spend money on clothes. I'm sure just about anybody who has battled with weight issues understand why I was waiting. I just didn't want to waste money on clothes that would only fit me for a little while. You see, in my head, my dip in weight was only a temporary situation, I was going to start focusing on my diet and work at getting my weight back up any day now, and it would be a shame to spend a bunch of money on clothes that were only going to fit me for a short time. That short time turned out to be nearly 3 years ... have I mentioned before I can be fairly stubborn.
That's not to say I haven't bought jeans in 3 years. Why, just last May I bought myself a pair of jeans when I was up in Prince George for work. Of course that was more because I'd ripped a nine inch gash up the calf of the only pair of jeans I'd brought with me and my Frankenstein hotel room repair with a handy dandy sewing kit was, well, lets just say that it wasn't the prettiest looking piece of work. But, like I mentioned ... stubborn, so those jeans I purchased were the same size as what I usually buy, not so much what I needed size-wise at the time. Needless to say, there has been a fair bit of a) hiking up my pants so as to avoid looking like I was trying for some gangsta chic or b) Belt cinched so tight that jeans were bunching out under the belt.
But no more. With the hard work over the past couple months, I was able to go into a store on Tuesday, grab a pair of jeans that was my normal size, try them on, and have them actually fit. Its not a huge milestone, it may even seem kind of silly, but it did feel nice to have a little more affirmation that my weight is back up to a healthy minimum point.

Thursday, 7 June 2012

Well, I've been very bad lately. There's no way to pretend otherwise. You would think after my last post were I felt so inspired after a positive clinic visit it would have been easy to keep the momentum going and to build on my current stable health, but in real life things rarely go the way one would think. The last time I posted in my Blog was 10 days ago, that's the longest I've gone without a blog posting since I started this thing. It's not that I haven't had anything to say, it's that I've been fully aware of how lazy I've been and have avoided posting so that I don't have to face myself and get my arse in gear. It's kind of like when I was a teenager in high school. My mom always knew I wasn't doing as well as I could in school because I'd just avoid the topic all together.
Now I don't want to overstate things, it hasn't been all bad. I've been keeping 100% to my treatment schedules and for the most part have been eating quite well. In the past that would have been something I was pretty satisfied with, but as far as exercise goes I've been severely lackadaisical. Why has this been happening, well there's a couple of factors/excuses, none of them particularly justifiable. Anyone who's here in the lower mainland knows that the weather lately has been bloody awful, even by Vancouver standards. It's not so much that it's been raining a lot that has sucked (though it has) as it has been just the consistent blah-iness. After I get home from a full days work, play with the girls for a bit until their bed time, the truth of the matter is that I'm fairly tired. Combine that with the fact that when I then look outside and just see the perpetual grey bleariness my motivation for exercise has just been sucked right out of me. So, now that I've gone all confessional for a bit, that's great and all, I fully own my inactivity, but what to do about it. Well it's fairly simple really. Tomorrow, regardless of weather, I'm going to go for a good walk half an hour at least at a good clip. On Saturday, I'm going to do the same. I'll take Sunday off and then go again Monday, Wednesday and Friday all the while picking up the pace a bit each time. After each time I go, I'm going to post in my facebook status how far I went (I'll also post it on Cysticlife). Clearly I need to up my accountability until I get back into my exercise routine again. This is where you the faithful reader comes in. For this upcoming week, if I don't update my status on any of those days I've listed above, you'll know I haven't done my Cardio and have my full permission to berate, needle and pester me as much as you want.

Monday, 28 May 2012

This past weekend was finally the Great Strides walk that I've been fundraising for for the past month and thanks so much to everybody who pledged me. The generosity from people I haven't seen or heard from in years was really quite touching. We woke up on Sunday morning dressed the girls all up in their red outfits so they'd match the team theme and hit the road for New West. For those wondering, the feather boa was our team symbol, I'm not just trying to be a trend setter for male fashion.

It was really great seeing how many people showed up. We got there a bit early so we let the girls play in the park for a little bit.

The walk went great, the weather was perfect, the girls were so well behaved as they let us push them around for 5km and even though we didn't go at a breakneck pace, it was really nice to not be winded after five minutes of walking.

Today the news got better. I had my regularly scheduled clinic follow-up just to see how I'm doing post surgery with my recovery and how my lungs are getting along. I thought going in I'd do ok. I was really pleased with the results. My weight has stayed pretty stable at just over 150lbs despite having had surgery a month ago and a pretty serious stomach flu just a couple of weeks ago. What I was really happy with was my PFT results. In December when I had my wake-up call that I needed to start doing things differently and what ultimately led to me starting this blog, my PFTs were sitting below 50%. In February, when I had decided on muy course of action and started putting my plan in place my PFTs were at 58%. After my IV's were done in March and was tested in my follow-up I had elevated my numbers 67%. After that appointment I had expressed a feeling that almost bordered on disappointment. I had worked so hard and "only" seen a 9% improvement. Many would be thrilled at that number, but growing up I was spoiled by regular numbers of +90% and I think a small part of me, deluded as it may have been, thought it would be as simple as putting in a little work and I'd be right back up there. This appointment my increase was less than last time, but I'm really thrilled with it nonetheless. I set a goal of 70% in my blog in march. Well I did that and then some and have gotten my numbers up to 73%. What this appointment has done, is inspire me to stay the course. I want to see just how much lung function I can claw back from this thing. I really don't know what is realistic or even possible, so I'm just going to keep setting goals in five percent increments. My last goal was 70% ... mission accomplished. New Mission ... 75%. After that, the next goal will be 80% and so on. The other positive that I saw in my numbers was that it wasn't just my FEV1 number that was up, but all my numbers across the board when it came to lung function.

This may sound kind of saccharine and cliched but on days like this, I really believe that if I keep up this level of dedication, I continue having the awesome support I have from family and friends, if all the amazing fundraising people are doing for CF continues and the progress in research and treatment keeps going, that this story will not only have it's happy ending, but that ending won't come for a very long time.

Monday, 21 May 2012

It's amazing how up and down things can go in such short periods of time. Last weekend was a true up as we did all sorts of awesome family stuff. Unfortunately Eva's getting sick in the van was an unfortunate little foreshadow of things to come. By Tuesday the rest of the household had come down with a stomach virus the likes of which I have been fortunate to avoid for as far back as I can remember. The larger ramifications of this little flu where that I while in its vicious little clutches I couldn't even hold down water. Even though it was little more than a 48 hr flu, it has essentially meant back to ground zero in more than a few ways. Luckily, it's not a complete reboot. Today, 6 days after the flu hit me, was the first day that I have managed to eat the minimum amount I need to eat in a day. Unfortunately my gut has always been super sensitive, it's the main reason I gave up drinking to excess because the hangovers would last at least a week or more every time. I was talking with my sister earlier this week and she was saying how it must suck since I've spent so much effort trying to get my weight up, only to hit a wall like this. The truth is, it just highlights how important it was for me to take the steps I did a few months ago. I can only imagine where things would be if I was still sitting just north of 130lbs and this flu had hit me.
The other way this has hit me has been that I'm back to step one on the whole exercise thing, breathing hard just to get around the block once or twice and no gym for over a week. But in truth that's ok too, the reason why is because I have a pretty well tracked plan on how to successfully, but at a reasonable rate, ramp my exercise level back up to where it needs to be. So, on Thursday evening, after having gone back to work that morning, I coughed myself around the block. On Friday, I did it twice. I'm definitely still not 100%, the gut has a ways to go and my lungs a still a little plugged up, but I start Tobi on Wednesday for my four weeks on and that will definitely make the trek back to 100% that little bit easier.
On Sunday though, we loaded up the fam and went to the Vancouver Aquarium. Definitely the highlight of the week as both girls stared at the giant aquariums filled with amazing fish and sharks and whales. And also pretty cool that a week that started out so roughly could end on such a high point. Just shows how quickly things can fall and then come right back up again.
Thanks again to everyone who has supported me in the great strides walk this coming weekend. The donations have truly left me without words. If you haven't had a chance to donate yet and still want to it's really easy. You can do the donation online at my Great Strides page Great Strides™ 2012. Or if you'd prefer you can contact me with a message and make a donation in cash or with a cheque.

Sunday, 13 May 2012

Well we this weekend Carrie and I decided to get out for some family fun. For starters, we finally saw some weather that almost resembled summertime. This weekend was absolutely gorgeous, and since I've been doing so well, there is no way we were going to waste it. We started by taking the girls to their first parade. On Saturday they had the May Day parade down in down town PoCo, so we packed up some gear strapped the girls into their car seats and headed out. The girls absolutely loved it. Eva was fascinated as she watched the VPD motorcycle drill team weave up and down the street performing tricks. Meanwhile Cassie decided that the parade was in desperate need of her involvement and continually tried to shake mommy she could walk with all the other people. It was absolutely adorable and the girls were fascinated watching for nearly two hours as the parade passed them. After the parade we went for a little walk, and maybe stopped at Dairy Queen for a little snack. I guess it shouldn't have been too much of a surprise that the girls were a little sleepy.

On Sunday we decided to take the girls for their first real trip to the beach and thought we'd visit Fiona's favorite dog park at Buntzen Lake to do it. Again we loaded up the minivan (I don't care how uncool people may think minivan's are, I love ours) and headed out on the road. Since the weather was great the beach was filled. Dogs everywhere and the girls cackled gleefully every time any of them came near enough to let them be petted. They also got to spend some time digging in the sand, which, while they weren't sure about at first, they warmed up to as time went on.

We ended up the weekend with a great Mothers Day dinner at my Sister's place with her family and my Mom and Dad. The sheer chaos of 4 kids, where the oldest is 2yrs and 8 mths and the average age of the four is something like 15 mths, is truly something to behold. We had a great dinner and there only a few territorial battles throughout the evening. Before we left we gave the girls a little night time snack, got them in their jammies and then bundled them up in the car. Now, I'm not going to add a picture of the last part of our story more for your sake then anything else. As we were driving home we stopped at superstore for Carrie to look for some red hats for the girls for our great strides walk in a couple of weeks. I let Carrie out and went to go find a parking spot. All of a sudden I heard some less then pleasant noises coming from Eva. I looked back just in time to see the visual result of those noises as she decided to say goodbye to her dinner and snack in the fastest manner possible. I quickly pulled into the fire lane and quickly got Eva out of here car seat. Now Eva was quite upset by this turn of events because aside from the casual spit up as an infant this is the first time she's actually thrown up and she didn't really understand what was happening. I quickly started the damage control and that was the moment when you realize how much you truly love your children. Here I was, up to my elbows in nastiness as I tried to clean the car and cuddle Eva at the same time ... and my only thoughts were that I hoped she was ok. No frustration, no anger, no repulsion at the mess, just parental concern. She was fine by the way and within minutes she was having the time of her life sitting in the front seat pushing buttons on the stereo while I made her car seat usable again.
The long and short of it is this was a truly great weekend and without all the effort that I've put in over the last few months, I never would have had the energy for it. I didn't have time for any afternoon naps and while I'm tired, I'm not exhausted. I also hope this can be an example for all those CF moms out there that worry if their son or daughter can have a normal life when they grow up. It really doesn't get any more normal than hitting up a parade, the beach and celebrating mothers day with your wife and two baby girls.

I also just want to add a little addendum. In two weeks I'll be participating in the Great Strides walk as a part of team "Reddy for a Cure". It's a team put together in honour of Eva Markvoort and I'm accepting any and all pledges of any amount you can spare, every dollar helps. Thanks to everyone who has already pledged me and I'll be sending out more personal individual thank yous to everyone who helps me after the walk.

Sunday, 6 May 2012

It's been a week since my last post and I'm thinking that's probably the rate my posts may come for a little while unless something exciting and newsworthy occurs. Seems that with treatments and babies and exercise and work etc, etc, etc life is very busy. That being said though I'm doing my best to avoid falling into a rut and keep up with my mission/plan. I've gotten back to the gym a couple times this week which is great and I haven't had any problems with my surgery site which is even better. I've actually really enjoyed getting back into lifting weights and I've been doing a better, more well rounded and generally more honest workout than I did when I was younger. It used to be when I went to the gym when I was in my early twenties I was going more for the vanity aspect of trying to put some muscle on my frame and to say I could bench press so and so amount. That being the case I completely ignored lower body exercises and would at times try to lift more than I should in lower rep situations and cause myself injuries which would really set me back in the long run (Especially since I seem to have inherited my fathers shoulder joints, thanks for that dad : D). As a result my workout program itself has changed more than a little. As opposed to doing High weight/Low rep sets on free weights, I now do at least 3 sets of ten or more at a lower weight. I've also mostly foregone free weights entirely, knowing that I have weak joints that are prone to strains it makes a lot more sense to use a machine that will limit my range of motion to a healthy movement. The final change to my program is that I'm now working all the major muscle groups Legs, Arms, Back, Back, Chest, Shoulders etc evenly. The biggest change I've already noticed though is how much this has helped my Cardio. The biggest problem that happens when you lose 20lbs off an already thin frame is that you have next to nothing when it comes to muscle mass or strength. On the pro side though you have a body fat percentage to die for : ). What would happen to me as a result of this though is the following:

As odd as it may seem, my lack of muscle and general body strength was limiting me way more than my lungs. By focusing more on my diet and caloric intake, in combination with the new workout regime, I now actually have the strength to do 30-40 minutes of hard cardio without my muscles being the limiting factor.
On the horizon of things to work toward is the great strides walk in 3 weeks, followed by a clinic check up at the end of the month. Also, since I clearly didn't learn my lesson last month, I've also agreed to do another 10km run coming up this fall.

I'd also like to congratulate every one that was a part of Cinema for a Cure that happened last night. I wasn't able to make it into town myself, but from what I've heard the evening was a complete success. There are a lot of people that put a ton of time and effort into putting on this event and they deserve a huge round of applause.

Sunday, 29 April 2012

In my last post on Tuesday I talked about how I was going to get back to exercise the next day. Well, that didn't quite happen. I started this blog under the auspice of being an honest account of the ups and downs of CF. A record that, when I look at it I can give myself a pat on the back or a kick in the butt as necessary. In the case of the sun run, pat on the back, in the case of the last 6 days, well you know where this is going. Also a way for those around me to spur me on a bit if I'm allowing myself to slip in the motivation or progress aspect.

In the past week I've meant to go to the gym, left the house with the intention of going there among accomplishing some other errands. I blew it off not once, but twice and the one time I actually did go, I cut my work out short because I felt guilty as I had come from the dog park and my puppy was still in the car (It wasn't particularly warm out, I just felt bad that she was lying in there by herself). I have done some cardio a couple times this week, but only for 20-30 mins and I know well enough that that's not nearly enough to help cut through the normal daily buildup in my lungs. Now granted my stomach isn't feeling 100% yet. But that has absolutely nothing with what has been keeping me from exercising. Laziness is the only real reason.

So, tonight I started things again, for real, no more talking about tomorrow. Tonight I got out and did my normal Cardio walk with the dog. It didn't feel great, there was some coughing, but it's done, and tomorrow I continue. I don't know about you, but for me it always seems easier to continue something, then to start.

Tuesday, 24 April 2012

I'll be honest, it's been a week since I last posted, and I have been a lazy bugger for that time. Sleeping between 12 and 13 hours a day, lazing on the couch for the remainder. No cardio, no gym and since my baby girls are visiting their grandparents, not even daddy duties. Now I guess some might say that since I had Hernia Surgery last week I was technically behaving. Piffle.
All that being said, there's not a whole lot of stuff to update people on since there hasn't been a whole lot of daily excitement in my daily ritual. Honestly though, I am seriously suffering from a severe case of cabin fever. I definitely have a new appreciation for the 4 months of bed rest my wife got to "enjoy" before she gave birth to our girls. Although, really it must of been much easier for her because at least she had me around to annoy and pester her for a few hours in the evening when would I get home from work. Really, I'm sure it helped to make her feel grateful for those day time hours when I wasn't around : ). So obviously, on top of uncomfortable and inert, I've been kinda bored. Not so bored that I've resorted to playing with my kids Fisher Price Farm, but lets just say that today it started looking way more entertaining then I'm comfortable with.
Good news though, all in all the surgery itself seems to have been successful, now hopefully it will hold for more than a couple years this time. And better news, tomorrow is when I get off my lazy hump and get my butt back in gear. I've only got a couple days of IV antibiotics left, and if I go off them having not done any sort of exercise for the previous 10 days, I'm definitely going to regret it. My stomach feels, well, mostly mended, enough so that I feel pretty comfortable with starting to get my exercise back on track. Slowly, of course, but steadily increasing.

Monday, 16 April 2012

The thing I've decided on in my attempts to get my health on a consistent path of goodness the last two months is that if I look at the end result I'm just going to get over-whelmed or lose interest. I've already noticed a few little bad habits already creeping in over the past couple of weeks. Not sanitizing my nebulizer mouth piece with the regularity I should. Perhaps not forcing myself to have that last little snack before my big pre-sleep gorging. I'm still doing a ton of good things, things I wasn't doing before. And these are by no means massive lapses in my care, I'm just illustrating how easy it is for these little concessions to creep back into our daily habits. But by setting little goals that are a month away, a month and a half away, it helps because that gives me a definitive target to work towards that's on the horizon, but not too far in the distance that I just decide to forget about it. The most recent target date came yesterday. Yesterday was the Vancouver Sun Run, an annual event where 60 to 70 thousand runners decide to torture themselves for an hour or two early on a chilly April morning. Admittedly, as I stood there with my Father and Brother-in-law shivering away for the half hour before the race, I wondered for a moment why the heck I was bothering with this when I could be at home comfortably snuggled under my covers. Once the race started though, I just set to it to give it my best effort. I made no delusions of being able to run the whole thing. In my training leading up to it, I'd never really managed run for more than a half mile at one time. No, I was planning on walking, but walking at a good pace. And I made a promise to myself that at the end of the race, I wasn't going to have left anything on the table. In my opinion, I kept my promise. I managed to run the first kilometer before slowing to walking, and pushed myself to run as often as possible throughout and finish by running the final kilometer to the finish line. As for my result, I'd hoped to at least do better the 1h30min.

As you can see, I more than met my goal. I generally try to stay even keel on things, not get to high or too low. If it's bad news, I find the good, if its good news I temper it with how it could be better. I'm not going to lie though, I'm really happy with this result. I couldn't have seen myself performing any better, especially considering I did this while awaiting Hernia Surgery! Now I'm just going to have to try and improve on that next year. I'd also like to thank my Dad and Brother-in-law for being there with me, even though once the run started I told them to bugger off and not worry about staying with me, it was really nice knowing they were there. And I'm pretty proud at the time my dad put in who was in the top 100 for his age bracket.

Well tomorrow is my much ballyhooed hernia surgery so I can finally get that bad boy repaired. This means I'll have to take a step back from the exercise for the next couple weeks, but I've already set my next mini target date. May 27th is the great strides walk, now it's only a walk and not a run and its only 5km, but it'll be 5km of me pushing a twin stroller so I'll need to have myself in pretty good shape : ). I'll also be fundraising for it so if there is anyone out there who wants to chip in to the cause I'll have info on that later.

Thursday, 12 April 2012

Saturday night was a pretty good night. I've been preparing for the Sun Run that's coming up here in a couple of days. Saturday I wanted to try and extend the distances I'd been going so that the 10k wouldn't be too much of a shock. I managed 7k in about an hour. Not too shabby. Then I kinda let the wheels fall off the bus a little bit. First, because I was so happy with my efforts on Saturday, and the fact that Sunday and Monday were going to be pretty busy days with Eastery stuff to do, I decided to give myself a couple of days off Cardio. The only problem with this is that, because it was a long weekend, my Gym's hours were all wonky and as it turned out I couldn't manage to find a time to get in when it was open. As a result I didn't really do a whole heck of a lot in terms of exercise from Saturday Evening thru to Tuesday Night's walk. Now this may not have been so bad, but in the chaos of Easter Egg hunts I made a real booboo. I forgot my enzymes with my morning Shake on Sunday which then led to two or three days of my Intestinal Tract being completely turned upside down. Needless to say, when I went to go and do my Cardio on Tuesday evening after week ... I got my butt absolutely handed to me. I was winded within a block, hacking up a storm and had zero energy because my stomach had been so upset in the previous few days.
It's really amazing how quickly things can slide, even when you've been on a great roll. But then that's kinda the point of this blog. To keep myself accountable, to document and celebrate the things I'm doing well AND show when I screw up too. I let my foot off the gas for a few days, now it's time to hit that accelerator again. I only have 5 days left before my surgery, when i won't be able to exercise even when I want to. I've got to try and do as much as can in the meantime. Anyways, next update will be following my 10k, My target time I'm aiming for is to finish in under 1 hr 30 min. Here's hoping, fingers crossed.

Saturday, 7 April 2012

To say that I bear the brunt of the physical effects of Cystic Fibrosis would hardly be an earth-shattering revelation to anybody. However, when it comes to the emotional impact of CF I would say it's those around me, and especially those who are really close to me, that really have to carry that burden.

I remember a couple of years ago a friend of mine got in touch with me. It turned out that her one year old son had just been diagnosed with CF. I offered to come by and talk with her and her husband about just what my life with CF entailed and hopefully attempt to ease some of the doom and gloom they might be feeling after receiving this megaton bomb of news. Their concerns were pretty normal given the situation. They were worried about just how there son would be able to deal with this bit of news as he grew older. What I told them is pretty much what I tell everyone who asks how I deal with the mental side of CF. It's my normal, being diagnosed at 3 months of age I've never known anything other than living with CF and the very fact that one day it might get me is something I came to terms with almost at the same time as I developed the ability for cognitive thought. To be honest, the amount of thought I give it in your average day is probably the same amount of time I devote to just what Kim Kardashian is up to. The way I see it, it's way harder to be diagnosed with something like cancer when your in your 20's or 30's because suddenly your life is changing and changing drastically.

If you were to ask those around me, however, I guarantee you they spend a whole lot more time thinking about it, especially when I'm sick. Before I talked to my friend, I asked my Mom how she dealt with and came to terms with my having Cystic Fibrosis. Understandably, her way involved a lot of tears in a lot of different places. Now, people who know me, know that I can be a bit of a crier at times. Happy times, sad times, movies, weddings, seeing my girls in their first ultrasound, well, you get the picture. The number of times I have shed a tear over having CF ... still sitting at 0. I don't hate it, I don't love it ... I nothing it. It's hard for those around us because they are forced to sit by helplessly and watch. All they can give is their love and support, which, from my perspective helps immensely, but from their perspective, I'm sure at times it must seem almost hollow and meaningless. The hard truth is, they can't breathe for me, they can't run for me and much to the chagrin of many, they can't eat for me. Even harder for them, is in those times when I really have to hunker down, I don't usually have the time, energy or wherewithal to notice and ease the angst they're feeling. The other hard thing, is that like many CFer's I've met, I'm really good at putting on the brave face. Even on my worst days I greet everyone with a smile and a bright hello and after they ask how I'm doing I'm always "ok". It's a habit, the truth is there's a lot of days when things aren't 100% ok. There are actually very few days when everything is 100% ok and usually things vary between different degrees below ok. However, it's just easier to say I'm ok then trying to explain exactly what I'm feeling. Now, while this makes it easier for me, it makes it tougher for them to get an idea of just how things are really going.

Now that I think about it, in all honesty I probably spend way more time worrying about how everybody else is doing with how my CF is going, than the actual facts of how my CF is going.

Now one last thing before I sign off for the night. That same friend of mine whose son was diagnosed with CF has done an amazing job of organizing a film fest fundraiser for CF for anybody in the lower mainland. So, I wanted to help get the word out. For anybody who can come, Cinema For a Cure; a double feature in support of Cystic Fibrosis research is happening on Saturday May 5th at the Denman Street Cinema @ 1779 Comox St in Vancouver. They'll be showing two CF related movies, one a drama, the other a documentary. If you are interested you should definitely go because in my humble opinion its a very good cause : ).

Monday, 2 April 2012

Whenever I tell people about my life with CF they always comment on how hard it must be, or how much I have to sacrifice in order to do the things needed to stay healthy. I thought it might be an interesting idea for a posting to discuss the top three "concessions" I've had to make for CF. Now I don't want the tone of this blog to be misconstrued. This isn't some blog of me doing my best Hamlet impression and spouting "O, woe is me" in fact its just the opposite. Actually, to be honest, I actually had to brainstorm a bit to come up with what I felt were three legitimate concessions. In truth I wanted to write this just as an example of how little I really have had to sacrifice and just how "normal" a life I've managed to live.

1) Realistic Career Choices - I remember when I was growing up, probably when I was around 11 or so and watching Backdraft, I thought firefighters were really cool. One day I was talking with my mom and off hand I said how awesome it would be to be a fireman. My mom then explained to me the reasons why being a firefighter was never going to be a real option. Now I don't want to make this sound like one of those moments were a parent just crushes the hopes and dreams of a child, because this was just the passing fancy of a young boy and she was very supportive in explaining why it was an unrealistic idea. Later when I was in my twenties I started to developed an enjoyment for acting. I took some classes, had a few parts on stage and even did some Improv and I was damn good in my own humble opinion. Again I started fantasizing about acting as a career. But the more I did it, the more I looked around at the other people I was acting with and noticing one common denominator, those trying to make it work didn't exactly have much job security or a gold plated health plan. That was when I started to realize Sacrifice Number 1 - that whatever career I chose, I was going to have to make the smart choice and perhaps not chase the fantasy. That being said, I've been really fortunate, I've found a job enjoy, but one that at the same time offers me amazing job security and health benefits. Now, maybe I'm not out fighting fires, or a master thespian, but really, I'm okay with that.

2) High impact sports - Now Number 2 could be argued to be a sacrifice that most people either have to or maybe ought to make as they get older. But it was a choice I was forced to make at perhaps an earlier age than some. Growing up, I was very active in sports, low impact, high impact, it didn't matter. I snowboarded and went skiing regularly, I also played hockey fairly competitively from the age of seven until I was twenty. Nowadays, however, I mostly avoid sports where there is a higher risk for serious injury. Especially anything that would result in an injury that would keep me off my feet for an extended period of time. Now this was a decision I'd mostly arrived at on my own, but it was seeing the impact an injury like this had on a close friend of mine with CF that pushed me over the edge in this decision. One day she was snowboarding and had a fall that resulted in her breaking her pelvis. She recovered in time, but was the first to admit that she was never able to fully come back to her old self after that injury and it was the beginning of a downward trend in her overall lung function numbers. The key thing is there are so many other activities that are great exercise and an amazing experience that cutting out a few activities that introduce a higher level of risk, is something I can live with.

3) Booze and Drugs - I'm not saying I've lived a Quakeresque lifestyle and never partaken in illicit activities or imbibed the occasional spirit. I'm just saying I don't anymore. I'd been told since I was a kid that I wouldn't be able to live it up the way most people could because of the high toll the medications I take had already had on my poor beleaguered Liver. My doctors weren't so naive as to say never drink, but they always advised me to be smart and use moderation. And for the most part I listened to them, on the other hand, I did go to University and well ... anyways. I'm fortunate however that none of the choices I made when I was younger have come back to haunt me in any measurable sense. My decision in the end though was quite simple. I've always struggled with dehydration, and booze really dehydrated me. Now when I was a teenager and in my early twenties, I would tend to recover fairly quickly. However by my mid to late twenties those quick recoveries now took the better part of a week where I was coughing out thick sludge and my stomach had the worst case of gut rot imaginable. To me, it was an extremely easy decision to just cut out alcohol completely as I rarely drank for the taste and more often drank for the drunk. Every now and then I crave a beer on a hot summer day, and some days I even relent and have one, but those days are rare.
So, there you have it. My big three sacrifices. To some people they may seem huge, even impossible, but from my perspective what am I really giving up. The other side that I prefer to look at, is look at everything I have, a good job, a beautiful wife, two adorable baby girls and a nice house. So if making these three sacrifices means I get to enjoy those things for even one extra day, then it is totally and unquestionably worth it.

Thursday, 29 March 2012

As a born and bred Vancouverite it's never really been in my nature to complain about the rain. From early October until the end of April, it rains here ... a lot. One of my best friends who moved here in his teens always complains during these months, personally I think he's just jealous because he wasn't genetically engineered with gills like the rest of us who were born here (that and sometimes he can be a bit of a delicate flower). In truth, typically in the past when it rained, I just didn't go outside. Rain isn't nearly as bothersome when your lying on a comfy couch playing Tetris. But, since I'm trying to do the right things and also get ready for my 10k coming up in a few weeks I can't let a little drizzle stop me. Unfortunately, that little drizzle has actually been a consistent down pour since Sunday night. I gotta say there's not much out there that is less motivating then looking outside and realizing that after about 7 seconds outside you'll be soaked and if this rain keeps up, you're pretty sure that you'll be able to do the backstroke instead of a walk or run. Now in the past all I would have had to motivate me is sheer force of will and lets be honest, that only works for so long. So I've tried to look at this rationally, a stretch for me I know. The truth is, there will always be reasons that can sap my motivation. In the summer it'll be too hot, in the winter, too cold. One of the other cf bloggers I've been talking with gave a great perspective. He was talking about how he was tired one day, hadn't done his exercise and really wasn't feeling to jazzed about the thought of doing it. He then thought about it and realized despite the fact he was tired, what was the worst thing that was going to happen by doing his exercise, he'd become what ... more tired. So it's wet ... so what I'll dry, it's cold ... I'll warm up and if it's summer and it's too hot, I can just pretend I'm Homer and make a fridge tent.

The truth is, short of legitimate illness or injury, there really aren't many excuses that we should let keep us from doing our exercise. Especially when you consider the ramifications of taking the easy way out.

Sunday, 25 March 2012

Well it's been ok week, still plugging along on my goals. The weight seems to finally be starting to plateau a bit, but that's to be expected at this point, I wasn't going to be able to keep up the 2 lb per week gains forever. The main thing I'm starting to notice though is the dreaded muscle fatigue. If I'm being honest I started noticing this a couple weeks ago but, as I've said before I'm a bit stubborn so I just kind of ignored it. If you think about it I've been pushing myself to do 5 days a week of hard cardio for 30-40 minutes along with three 30 minute gym workouts. It's not surprising my muscles are getting tired. It's not so much the upper body, but my quads and calves just feel, well tired. And oh yeah until a couple days ago I was neglecting a fairly important element of any fitness regiment ... stretching. Now, before everyone out there starts rolling their eyes at me and saying "oh Todd" let me explain myself a little bit.
Historically I've never had much patience for stretching or the whole warm-up thing. Growing up you always heard "If you don't stretch you'll pull a muscle.". In truth I always kind of put it in the same category of things adults say like " If you keep making that face it'll freeze that way." Playing hockey I always hated wasting energy before a game trying to take wicked shots on the goalie or stretching hard in one of the corners. I figureed I'd rather save my energy for the game. Instead I'd do a couple of laps, toss a few pucks towards the goal and then hang out at the bench waiting for the opening buzzer. When I played baseball I never stretched because ... well, c'mon, it's baseball. And while I stretched a lot when I did track and field and cross country that's because the coaches always led the stretches and EVERYBODY had to do it and it was only on practice days. On event days though, when the coaches were busy with other things I never bothered. And to this day my number of pulled muscles due to improper stretching still remains 0. However, the thing I've noticed is that I'm 32, and while I'm not pulling any muscles, I don't recover with the same speed as I did when I was 14. And I'm not just talking about the next morning after a night spent with Mr Alkie Hall. What this means, is that I need to be a little bit kinder to myself. What I've started doing is some basic stretching before and after exercise the last couple of days and it has already started to help in that regard. I also found a great DVD we had from when we invested in the whole P90X fad. There is a disc in the set that I've been using on off days that's just a stretching routine intended for off days.
So, other than my educational lesson in stretching there hasn't been a whole lot else of great excitement in the land of Todd. However, with the Sun Run and my Hernia surgery less than three weeks away, I'm sure things will be getting more interesting soon. Oh yeah and my daughters are both walking now ... but that shouldn't change things much ... should it?

Wednesday, 21 March 2012

It's hard to describe the gamut of emotions over the last day as I went in for my first clinic appointment since my general health overhaul. In my first blog I talked about the different excuses/reasons I could use for any declines in my health. The truth is, for the better part of the last three years there have been a variety of perfectly valid and justifiable reasons that I could use as my wife and I went through the highs and lows of IVF, pregnancy and new born infants. Now this doesn't mean that for the last three years I shirked all responsibility for my health, when meeting with my doctors and health team I generally took ownership of any short falls or disappointing results. However, in the back of my mind I would always know that if I applied myself the results could and would be better. The problem with taking hold of your life and doing the right things means that you no longer have that little voice in the back of your mind saying "it's ok, if you actually decide to, you can step it up, you can be better". No, that voice now has to say "Well, this is it, this is the best you can be" and you just have to hope that you're ok with the results.
That thought process is what actually led me to be nervous for the first time for as long as I can remember, maybe even ever, when it came time to do my PFT's. I knew they'd be better, the question was how much better. I wasn't nervous about my weight since I've been able to track that at home (more about that later), but with PFT's you just don't know until you blow. Was there only going to be a modest improvement of a few percent or would I see results of the sort that I haven't seen for the past five years. The truth of the matter is, the results were somewhere in between. On February 8th my FVC which measures my total lung capacity was sitting at approximately 95% from what the predicted measure should be based on my size and weight, my FEV1, which measures the amount of air I can expel in 1 second, was sitting at 58%. These are the two key metrics the doctors use in monitoring lung function. Today my FVC had gone up by 6% to 101% a good number and fairly consistent with my past as I've hovered between the 95-105% range for most of my adult life. My FEV1 moved up by 9% to 67%. I can't explain why, but if I'm being honest, my first reaction to those numbers was disappointment. I know that's not being fair or realistic. Those are dammed good improvements and I wasn't deluded enough to think that just by picking up jogging a couple times a week, going back to the gym and riding a stationary bike for a few weeks all my ills would be cured. I just wanted more ... but that's not a bad thing. If all it took was 6 weeks of work to undo years of malaise the lure of allowing yourself to fall into old habits wouldn't be as hard to resist. This will take a while, and I WILL have to earn it. The harder I work, the more reluctant I'll be to allow myself to waste that effort. My goal for my next clinic appointment in May is for my FEV1 to be above 70%.
Now for the funniest moment of my appointment which happened at my initial weigh in as Joanne, the Clinic secretary, had me step on the scale then went to write my result in the chart, only to come back because she was sure she had misread the scale ... I'd gained 15 and a half pounds since they'd seen me six weeks ago : ).

So all in all, when asked if I'm happy with my results today I'd have to say yes, but am I satisfied? Not a damn chance. When I started this a month and a half ago, I knew it was marathon, not a sprint. All today really did was reinforce that belief. Today marked the first mile. And thanks to all my family and friends that have been encouraging me so far because you have no idea the impact you've had in helping me keep going. It helps to know that I'm not on my own in doing this and if I start to let my foot off the gas a bit, there'll be a full bus load of people right behind me to kick me in the ass and get me back on track : ).

Sunday, 18 March 2012

So, it's been a few days since my last update. And oh it's been busy. I was doing some time math the other day. I average about 7-8 hours a night of sleep, I work for 8 hours a day, you add in two hours commuting and an hour for getting ready in the morning, that leaves 5-6 hours. The first 2 hours after work is with the girls, giving my wife a little bit of a break before their bed time and allowing me to spend some time with them. Now we're down to 2 or 3 hours for treatments, exercise and maybe a little unwind time. So, needless to say, days are a little jam packed. The great news is that after one week of that schedule, I'm still feeling great. I'm doing a better job of letting my wife know when I need to take time for my health and as always, she's been amazing at picking up the extra slack. It's always tough for me to step back and say I can't do something, or that I need to step away from my responsibilities as dad and husband. I always feel guilty that I need to do more around the house, feel like I'm carrying my weight. I even say this to my wife at times, which is invariably followed by a look of incredulity from her as she cites the above daily routine.
Whats made this week even more crazy is that Today we had the girls FIRST birthday. It was the greatest scene of disorganized chaos. The present unwrapping was done in breakneck speed as the girls cousins Madi and Abbie tried to see who could bring the presents to Auntie Carrie the fastest. And the girls first birthday cake seemed to be a hit as is evidenced below:

Besides the sheer awesomeness of my daughter forgoing the use of hands to simply faceplant into the icing, my favorite part of this picture is in the background. If you look closely you can see Fiona lurking, just hoping that one of them will pitch some cake her way. The party was awesome, Carrie's parents got up at 5am in order to make the trek down and arrive on time. And another thanks to my mom for coming out yesterday and helping us with the preparations.
On top of all this, my goals are still going great. Despite the increased activity of working and continuing to exercise consistently, my weight managed to go up by another 2.5 lbs this week. That means I'm now halfway to my ideal weight goal. Next update will be my first post clinic update. I'm actually looking forward to this appointment as I can see just how much progress my hard work has brought for my PFTs. A read great point on one of the other CF blogs, it doesn't matter what your PFT's are compared to others, its how they do compared to yourself. 6 weeks ago my FEV1 was sitting at 58%, I'm really interested to see where they are now.

Tuesday, 13 March 2012

Over the last four weeks I've been slowly adding ball after ball to the juggling act. In week one it was making sure I was 100% compliant with my diet and treatments. I've been tracking my daily nutritional intake so that I can see if I have an off day, I can know I need to pick up my socks the next day. I also haven't missed a single treatment in the past four weeks. All the pills, all the nebs and all my physio. This may seem like a simple step, an easy win that anybody with what I have should be able to do, but for me I've always struggled with a memory block. When I was a teenager my doctors and parents worried about why I didn't take my enzymes consistently. People were convinced it had to be that I was maybe ashamed or trying to hide my condition, or maybe I was just trying to rebel. It just didn't seem fathomable that I was just plain and simply forgetting to take them. Looking back I can only imagine how inane it sounded and to this day when I tell people that this was the case they just look at me with incredulity. Generally it ends in this face

This is actually a look I probably get at least once a week from my wife ... and usually deservedly so.

Anyways, week 2 was the introduction of 5 or 6 days of exercise a week made up of a combination weights and cardio. I've been managing 3 weight work outs a week where I've been slowly ramping up the intensity as my muscles return from their exile. I've also been doing three days of walking or running for between 30-40 Minutes and two days on an exercise bike for a similar duration. So far so good.

Week 3 was the reintroduction of my awesome family. I missed them like heck for the two weeks they were visiting my wife's family, but having them here does mean I can't be as selfish with my time. As many people have told me, taking care of myself now will help them in the long run, it's sometimes hard to see the forest for the trees, but I'm doing my best and my wife has been awesome and amazingly supportive picking up the slack.

Now it's week four ... the re-introduction ... of work, dunh dunh dunh. This is the last ball that needs to fit into the juggling act and so far so good, it's only been two days, but my energy level has been good. I don't feel like I'm going to pass out at my desk as the day goes on. Yesterday I took my rest day from exercise, but today I managed both a gym workout and a 30 minute walk/run along with a full day of work.

I know there will be set backs, but so far it's been nothing but positive results. As for my quest for the sun run, looks like it is officially a go. I've already hoodwinked my 60+ year old father and my Brother-in-law into joining me in my personal flagellation, but any one else who wants to step up to the challenge are welcome. My surgery is booked for April 17th, which is two days after the run. So while they may have to wheel me in because I can't move, but it's on like Donkey Kong.

Friday, 9 March 2012

So first I'll start with the good news. Yesterday was my last day of walking around all tubed up and carrying my manly man satchel. My weight has also kept going up, not as much as before, but that's to be expected. It's now up to 142.5 which means I've gained 12 pounds over the last 4 weeks. I've added a little weight graph tracker to show my progress towards my ultimate goal on the left there. I'll be adding a new one showing my lung function's progress once I get my PFT's done on the 21st of March.

Now onto the Sesame Street Lesson of the day for Todd brought to you by PBS. Last night I went to the gym and took the dog out for exercise. While I was playing with the dog I hid my wallet, phone and iPod under the seat. On the way home from that I opened the window a crack for some air. This morning I realized that I had left all of those things under the seat last night and hadn't rolled the window back up. I realized this because when I went to my car my glove box was open and its contents were sitting nicely on the passenger seat. Wallet ... gone, cellphone ... gone and yes, iPod ... gone. Now the easy road to take would be "Stupid Thieves" and "Thieves Suck" maybe with some more colorful language, but I'm trying to keep it classy here. The truth though, is that this was my own damn fault. The last month, I've been focusing hard on my health, doing everything right for it that I can, no missed treatments, no missed workouts, no missed meals. Very focused ... and perhaps a bit too focused. The lesson I'm choosing to take from this is, that while its great to focus in on one element of your life, you have to be careful not to miss the rest of the stuff that needs doing. I can be bit of a victim to tunnel vision, focusing to the point of obsession on one thing and letting all else slide. The key to making my life and my CF Life as good as possible is finding that healthy balance where I'm doing everything I can for myself, but also trying to juggle work, being a father and all the other little minutiae. It's not an easy task by any means but it is doable, and its just one more thing I'm working towards :).

Monday, 5 March 2012

So, for anybody who knew me when I was a kid, knew that I used to be pretty good runner. Cross Country, Track & Field, Sprint or Distance, it didn't matter. Around the time I was 15 I was doing the 10km Sun Run in just under 50 minutes. I'm not sure what changed, but somewhere around the age of 16 or 17 I began running less and less. Probably had something to do with getting a license and absolutely nothing to do with the fact that, oh yeah, running is kinda sweaty and requires effort. I was still physically active, I still played sports like hockey, I just didn't really run anymore.

Now, why am I rehashing this fascinating history from yesteryear. Because, two days ago I tried running, and then today, I tried it again. And I've come to the conclusion that ... wait for it ... running is hard. I've learned two key details and come to one clear yet subtle conclusion, all of which some of you may be unaware of.

Unfortunately, I've yet to find a running route that departs from my house and then arrives back at the same house that meets this all downhill requirement, but I promise to keep searching.

The only bad news that resulted from this is that I'm afraid I'm going to have to disown my dog. She seemed to take far too much pleasure dashing ahead of me, turning around and looking back at me as I gasped towards her. She is impertinent and needs to know her place ... show-off. (I'm only kidding, I could never get rid of Fiona, she does too much good work cleaning up after the girls)

In all seriousness, even though I was unable to go for more than a couple hundred meters at a time without needing to walk for a stretch, I was still really happy just to be out there moving. And I know if I work at it, it'll only get better and better.

So with that being said, I'm going to lay down the public smack down gauntlet on myself. It is March 4th today, the Vancouver Sun Run is on April 15th. That gives me 42 days or 6 weeks to work towards a point where I can complete it. I'm not saying I'm going to run the whole way ... in fact I'm saying right now that's probably not going to happen, but I will complete it and do my best to run for as much of it as I can. There is only one out that I will provide to myself that will prevent me from doing this. I'm still waiting on my Hernia surgery date, so provided that that date does not fall between now and the Sun Run, I will be taking part and anybody can see how I do by reading a copy of the April 16th Vancouver Sun Newspaper. I may also let people know on here as well ... if I'm still moving afterwards ; )

Friday, 2 March 2012

One of the topics I've noticed among CFer's is the debate between whether or not to take the plunge and get the surgically implanted port or stick with getting PICC line's every time you need IV antibiotics. Before I get into the pros and cons, I want to give a brief background for people reading this who are not overly familiar with CF patients and IV antibiotics. When our lung infections get bad enough, CF patients require heavier antibiotics via intravenous infusion. The problem with these meds is that they are so strong that they cause the veins to collapse, typically in less than 24 hours. Meaning we would need a new IV daily ... obviously, not a fun idea. This leaves two alternatives, PICC lines or IVAD ports. PICC lines (Peripherally Inserted Central Catheter) are a catheter/tube typically inserted into the arm just above the elbow (I've heard they can also be done on the leg as well), the tube then follows the vein all the way to the patient’s heart. This means there is no vein that can collapse and the meds get dispersed so quickly by the blood flowing through the heart that they don't cause damage there (This is a VERY rudimentary description, but good enough to allow people to get the gist). IVAD's (Intra Venous Access Device) are a small domed port inserted subcutaneously beneath the skin and stitched into the muscle with a tube that in my case goes from my port into the jugular vein and then onto the heart.

First here are two pictures of my port, one from the side and one front on (please pardon my pasty whiteness, it rains a lot here):

Now I'm not going to get into the medical benefits between the two because ... well, I don't really know them and I'm not a doctor. All I'm going to do here is describe the pros and cons of having a dome as I've see them for myself. So the pros first:

1)Whenever I go on IV antibiotics I just stick in a needle slap on a Tegaderm op-site bandage and I'm good to go. With PICC's I always just found the insertion process to be a bit of an ordeal, uncomfortable and yes, painful. When I'm sick, the last thing I wanted to go through was something that hurt.

2) Perhaps one of the more superficial benefits, but one that is really great, is the ability to shower properly. With a PICC, I always had to shower with one arm covered and elevated away from the water while I tried to shampoo one-handed. With the port, when it's time for my weekly dressing and needle change, I can just remove it all, have a good long relaxing shower without worrying about keeping any specific area dry.It may seem like a small thing, but I find it really nice.

3)The next pro is a bit more specific to my own circumstances. I have two infant daughters who grab at EVERYTHING. They’ve already accidently pulled the needle out of my port once. Fortunately, because I had the port, all I had to do was replace the needle and redo the dressing over top of it. With PICC’s I’ve accidently gotten my line caught and given it a good tug which then resulted in me having to go into the hospital, having them re-position it and then do an x-ray to make sure it’s in the right place again.

4) The last pro and probably most important for me, you can still do things while on IV meds. I'll admit that when I was younger, I would actually play in full hockey games with a PICC line in my arm, under my pads. Now, while there were never any complications that resulted from this, that may have been more just good luck. With the Port I can just pull the needle and dressing and then just redo it after whatever activity I wanted to do to try and keep myself fit. I have no limitations even though I'm on IV meds.

Now here are the cons as I see them:

1)You do have to have minor surgery to have it installed and as a CFer, general anesthetic is not an option, that means you're awake for the procedure. Now for me I've had a half-dozen hernia surgeries while awake among other small surgeries and procedures, so this didn't really bother me much and yes it hurt a little bit more afterwards than having your average PICC line installed, but not by that much.

2)You have to access and flush the line once a month when you are not doing IV antibiotics. That means one needle poke a month and while I've heard from some people eventually the skin covering the dome will go numb and it won't hurt anymore, for me this is still not the case. It does still feels like I'm stabbing myself with a needle in the chest.

3) As with anything there can be complications, my first dome's tube failed after two years due to a random defect. I still chose to have it replaced even though I’m only on IV antibiotics once or twice a year and have had the new one for two years and a half years now without problem. Also, because the dome is permanently under your skin, you run the risk of it getting dislodged and needing to have it replaced. For those who know me, they know I bump into things all the time. Also, as I said earlier, I have two 11 month old girls so there are lots of opportunities for this to happen. Luckily for me, so far it hasn't.

4) The superficial element.When you have a PICC and you’re done your IV meds the docs just take it out (or if you’re me, you take it out yourself … not usually recommended, but I was young and impetuous at the time).With the dome, it’s always there depending on where and how they insert it, it can be fairly prominent.I decided I just didn’t care anymore and was fed up with PICC’s.

5)Lastly, and this sort of stems from the last point, it can lead to some awkwardness sometimes. I had my port installed before I met my wife. Understandably, without going into too much detail, inevitably there came that first time when she noticed it and wondered what that weird lump on my chest was. Now, luckily for me, my wife was awesome about it and didn't make me feel awkward or self-conscious about it at all. But of course it is yet another thing for us to perhaps feel self-conscious about.

So all in all, I am very happy with my port and don’t regret it at all. Hopefully this’ll help people decide that either a dome isn’t worth it, or that, like me, the upside outweighs the downs.

Monday, 27 February 2012

So I know I promised a long winded and overly wordy dissertation on my pros and cons of the PICC line vs IVAD ports. However, that was before I found out that I would be visited by a lovely virus for the past few days. It came on at some point on Saturday. At first I thought it was just general lethargy so I decided to ignore it and push on with my daily bike rides I've been doing ... that may not have been the best idea. As a result I felt Saturday evening and all of Sunday with a headache that left me feeling somewhere between the guy that Michael Ironside decided to pick on in Scanners, and the scene when Schwarzenegger gets sucked out onto Mars surface.

Ok, ok, maybe I'm taking a little creative liberty with just how bad the headache was, but considering I'm already on this lovely cocktail of IV antibiotics I'm not exactly running at 100%. That and I watched Total Recall yesterday and seriously, Schwarzenegger made some seriously awesome faces in that movie, I'm so tempted to do a weird Schwarzenegger faces montage but I promise, I'll resist.

So back to the point, the final damage as a result of this little virus means I lost two days of exercise as I also took today off to make sure I was totally over it. The good news is the outside of losing those two days of exercise, the damage was relatively minimal. My cough seems to be up a little bit, but I don't really feel any new congestion points. I'm also sporting an awesome husky whisper as I seem to have completely lost my voice. Other than that though I managed to force myself to keep my eating up and the rest of the bug seems to have run its course.

Now, since at first the only symptoms present were headaches, a little virus is better than the alternative. Let me explain, this is one of those times where home IV can be a bit more difficult than a hospital stay. You have to be very good at noticing warning signs and reacting appropriately. This is what led to two firetrucks and two ambulances outside my parents house on a Saturday night when I was on Home IV and staying there alone 11 years ago, as well as one of the more entertaining times I've had hanging out at an inner city ER, but that's a story for another day.

One of the meds I'm on is Tobramycin. One of the side-effects is elevated creatinine levels. Creatinine is a waste molecule that is created in the blood and filtered out by the kidneys. If these levels get too high it can lead to complete renal failure. Obviously, this would be bad. Now here what they do for patients on Tobramycin doing home IV is that we go in twice a week for blood work so that they can monitor these levels. Depending on what this blood work shows thy will adjust the dosage amount they send me. In the past I've had elevated levels as a direct result to being on Tobra and one of the main symptoms that shows up is dehydration. Now class, all together, what are two of the top signs of dehydration ... lethargy and headaches. Needless to say when my sore throat showed up and I lost my voice late last night, I was strangely happy. Had the headaches continued into this morning and no other symptoms had shown up, I was going to be making a few phone calls to some medical professionals.

All in all though, I'm still determined to keep the progress going. This is just the first little bit of adversity thrown my way in my fresh start to try and get fit. There will be plenty more in the weeks and months ahead I have no doubt. I'm as focused and determined as ever to keep my progress going. I've managed to gain 10 lbs in the last two weeks, this means I only have 15-20 lbs to go before I hit my ideal target weight. Tomorrow, provided I feel as good as I did today, I'm back to the gym for some solid cardio and a circuit of weights.

Thanks again to everyone who keeps reading and offering the encouragement, it's your feedback and support that allows me to take any adversity in stride and have the strength to not let it faze me.

Friday, 24 February 2012

Just a short update today. I was talking to my wife yesterday about how today was weigh-in day and both of us were struck by the same mental picture. We just couldn't help seeing me as one the people on biggest loser every time I step up to the scale, but unlike them I hope the number goes up, not down. Now, I've been working bloody hard the past week on both weight and exercise. That being said, it's nice to see some sort of tangible result. Now with exercise it's hard to have tangible results, other than feeling better each time you do it and pushing yourself to do a little bit more. Usually it's only after extended period of consistent exercise that you can look back and realize how far you've come. With weight, it's a lot easier to track progress in the short term, either I gained weight in the last seven days, or I didn't. Now it should have gone up since I've been averaging over 5000 calories, but when fighting an infection that burns through the calories I eat, you just never know.
For those curious my exercise is also going really well, I took yesterday off and I just felt weird. Back at it today though with another half-hour bike ride and got the lungs going really well. Also did a second trip to the gym.
Later this weekend I'm going to do a big update on the pros and cons of getting a IVAD port or sticking with PICC lines. It will be a bit long winded but, hopefully helpful for any other CFer's trying to make the decision.

Tuesday, 21 February 2012

So it's been a while since I graced a gym with my presence. I did the actual figuring and I think it's been about three years since I last lifted a weight in anger and at least seven years since I was working out with any real regularity. Now in that time a couple things seem to have changed that I feel some one should have told me about. It is clear that one of two things has happened, either:

a) They have made some changes to the metric system
or
2) They developed some sort of gravity enhancement machine that increases the force of gravity in the gym

These are clearly the only two possible explanations. All kidding aside, it felt great to be back in the gym. Really for anybody who hasn't been for a long time and are worried about trying to get back into it, as cliche as it sounds, it's just like riding a bike. I only did a basic workout, Bench Press, Lat Pull-Downs, Shoulder Press, Bicep Curls, Tricep Pull-downs and Squats and I kept the weights low in order to avoid looking like this guy:

Normally I'd have done sit-ups of some kind, but since I'm still waiting on my surgery date for my hernia repair, I figured that may be a bad idea. The bike cardio is also going well, I managed 30 minutes a day for the past 3 days.

Thanks again to everybody who's been sending positive thoughts my way, it's really helping to inspire me to keep pushing. Also, if anybody has suggestions or topics that they'd like me to address feel free to let me know.

Pet Peeve of the day - Anyone who knows me, knows I sometimes tend to move, well ... quickly and maybe a little bit clumsy. Add in tubes, and well, I think you can see where this is going. Luckily I tend to double bandage my injection site give myself a little more leeway, but I'm getting so tired of catching my damn lines on every little thing.

Saturday, 18 February 2012

Well, here's the update for day two. First off I want to start by thanking everybody for the awesome encouragement I got after my first post the other day. It's always a bit nerve wracking putting yourself out there for everybody to see, so to have as many people look at as they have and to comment back as they did felt really, really great.

Now onto the news. Got hooked up to my old familiar friend the CADD Prism Pump. This means I'll get to be looking like I'm ever so stylish carrying around my man murse. I may just have to go out and pick up a pair of capris to finish off the outfit just so I can try and say I'm following the latest in European fashion.

On second thought, no. Capris are out. I have bony shins and they may get cold a little bit nippy, what with it being winter and all.

Now for a little update on my progress. In my last blog I talked about wanting to avoid shortcuts. From the way I can see it daily CF care for me breaks down into three elements:
1) Medications
2) Food and Diet
3) Physical Exercise

So far it's going pretty well, yesterday I managed go for 20 minutes at a pretty good clip on the Stationary Bike and then topped that today with 25 minutes. Ok so maybe after I finished I felt less like this:

and more like this:

But regardless of how I felt at the end, the key is, I did it. I got my butt moving and my lungs flowing.

A great blog that I've been using to help get me motivated is Ronnie Sharpe's, a fellow Fibro from Arizona. He's been throwing down the daily exercise challenge from his hospital in Tucson and I've decided to try and do my best to match him step for step. His blog by the way is @ runsickboyrun.blogspot.com.

I've also been doing my best with eating for the past week and hitting my meds with 100% accuracy. Now admittedly, I don't entirely trust my scale upstairs but in theory, since it's digital it should have some semblance of accuracy (geez, could I fit the paranoid weight watcher stereotype any more, yeah ... it's the scale, that's the problem). Anywho, so when I weighed myself last week, I was coming in at 130.5 lbs, last night in the same clothes and at the same time I weighed in at 134.5 lbs. Now even if the increase is off by 50% I'd still have managed to gain almost a Kilo in a week. My minimum target goal is to get my weight back to at least 150 lbs.

Now, so far, it's all roses and puppydogs. Things are going well, but right now I'm motivated. Admittedly, the early results with the weight gain has me really stoked. I am tempering my enthusiasm though. The real test will be a few months from now when I maybe start to slip back into some of the old habits. That's going to be the purpose of this blog and hopefully the more people that follow and offer encouragement the better it'll go.

Pet peeve of the day - Damn itchy skin under the opsite bandage for my port. OMFG, I just want to itch it so freeking much : ).

Thursday, 16 February 2012

Ok, so, here goes. I’ve decided that today will be ground zero. Last December I let my PFTs drop to 48%. This just 5 months after last being on IV antibiotics. Now some people will look at this and say, that’s really not that bad. Even at my worst that wouldn’t even qualify me onto the list for transplant. Others would point out that I’ve had a pretty remarkable and magical year and so it’s understandable if I’ve been distracted and things have slipped a bit. Any slip could even be somewhat attributed to yet another Hernia (that’s number 7 for those of you keeping score at home, I may have seen this surgery enough times that I can do it from home next time). All of these are true. Truth is, as often as other people have told these things to me, I’ve told myself all these things as well. So now it’s time to do something about it.

The last few weeks I’ve been laying the ground work to try and start approaching my health head on. Doing everything I can to make my health as good as I can. This means no more shortcuts. Lord knows I’ve got a few pretty good reasons to put the effort in.

In the next few days I'll be posting on just what things I haven't been doing and what I'm planning to do about it. Hopefully by showing my own little foibles some others out there may see some similarities and be inspired to make some changes themselves.

Now, onto the blog, the purpose for the blog is that it’s going to be something that:

1) 1) Allows me to track my progress from this point on to see just were my health can be if I do all the things I that will help it.

2) 2) Allows others with CF to see what I’m trying to do and how I manage to deal with the obstacles that came my way in trying to accomplish this (and hey any pointers along the way will always be appreciated).

3) 3) Finally to try to provide an example of what can be accomplished with CF regardless of what supposed limitations are said to exist.

This first post has been kind of serious in tone and that really isn’t my intention for my blog. As a result, there is no better way to end this then the following …